The ABCs of Autism

One of the greater challenges of writing this column is to convey as many aspects of parenthood as I can despite my lack of expertise in a particular parenting topic or dilemma. This means that I have to go beyond my experience as a parent to understand issues with which I’m not familiar – to step out of and look critically at my own parenthood in search of empathy and appreciation for what other parents encounter.

I’ve wanted to write about autism for a long time, but felt I didn’t have the right despite the fact that someone I love very much was diagnosed as a toddler. But the topic has so preoccupied me that I wanted to honor my relatives who have fought so hard for their autistic son to be educated in a school where he is not left in isolation for hours at a time if he becomes agitated. They fought for their son’s right to go to an out-of-district school that would properly nurture him as part of his education. After a lot of tears and angst and legal maneuvering, they won.

I read blogs and books by parents whose direct activism on behalf of their autistic children are changing the way the world understands and accepts this disorder. I think these parents’ dedication has created a historic movement that has led to groundbreaking research on the topic as well as captured an elusive empathy.

To do my job properly, I want to point to people who have shared vital, life-changing stories about the sad, surprising and beautiful ways in which autism has shaped their families. Susan Senator, a local Bostonian, is one of the most passionate and effective teachers and writers I’ve read on autism. Susan’s mothering of her severely autistic son, Nat, is brave and hard, and completely natural. Read her blog. Search out the three books she has written about autism and family life. You’ll learn so much about autism and the obstacles she’s overcome bringing her son to adulthood.

Here’s a lively example from the introduction to her Web site, Leo Tolstoy once wrote, “Happy families are all alike; unhappy families are all different in their own way.” Tolstoy was wrong, especially when it comes to atypical families. My family is very different from a lot of families; yet I would say we are happy. My oldest son, Nat, now 21, has severe autism. My other two sons, Max and Ben, do not. Autism has provided a certain shape to our family structure; things have been very difficult for us, and yet autism is not a death sentence. Autism is not the end of the world; just the end of one kind of world.”

I recently discovered another go-to parent on autism on the New York Times Motherlode blog. Joel Yanofsky has chronicled his adventures – yes, I use the word intentionally to capture Yanofsky’s wonder and confusion and, at times, sense of urgency as he parents his son Jonah – in a lovely memoir called “Bad Animals.” I came to his book after reading his essay about preparing Jonah to become a bar mitzvah. It’s a piece that works so well and is so memorable for the way it melds humor and pathos:

Anyone who’s organized a bar or bat mitzvah, a communion, a sweet 16, even a relatively big birthday party knows how much there is to prepare. But when your child has autism, as Jonah does, the preparations never seem to end; nor does the worrying about everything that might go wrong. So, yes, it’s even money that on the day of his bar mitzvah Jonah will do something interesting. I’m betting that just as the rabbi is briefing him on the significance of this time-honored ritual, Jonah will give a shout-out to his favorite animals, yaks and zebras.

Hence the title of Yanofsky’s memoir – a reference to Jonah’s obsession with all things related to animals and the title of his illustrated book for a school project, which features animals arranged alphabetically in various states of bad behavior. But the genius of Yanofsky’s memoir is that his son is never an object of curiosity. Nor is Jonah a saccharine source of inspiration. He is what every child should be to a parent: the source of an indescribable love that is more than occasionally laced with frustration, amusement and pride.

As engaging as Senator and Yanofsky are – as brilliant as they are at breaking their readers’ hearts and then putting those hearts back together for them – they are at the end of the day parents who are mired in a thick alphabet soup of acronyms that stand for bureaucratic and sterile terms like Individualized Education Plans, Pervasive Developmental Disorder, Applied Behavioral Analysis. IEP, PDD, ABA – they feel like billboard-sized letters taking over space and time in hearts and minds and homes.

But Senator and Yanofsky are not Don Quixote figures tilting at inflated letters. They scale these letters to tell the world exactly what their children – their autistic children who have created unique, bright universes around which their families orbit – deserve. And it’s not an acronym: it’s a basic right called Respect.

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